Fibro not progressive????

I was just curious about this. I read here a lot that fibromyalgia is not a progressive illness. In my opinion it is. I didn't just wake up one day and have all this pain. It started with the pain in my neck from the DDD and pain in my arm, then slowly my entire back, legs, hands, feet, ribs and migraines. I have had every test in the book and they are all negative. So over the last 5 years mine has definitely progressively gotten worse.

Yeah, I'd have to say it depends on what else you are dealing with and how you take care of yourself. If a fibromite refuses to move because it hurts and eats junk food all the time because it is easier...then they will probably keep getting worse, mainly because they'll trigger other illnesses.

When my pain started it was only in my hands. Over 6 months while i was undergoing many different tests the pain kept spreading until it was over my entire body. That was when I was diagnosed. Since then I've tried many different things, physical therapy (did NOT help), chiropractic (helped some), acupuncture (helped a lot more), limited daily gentle exercise (helped a lot), Diet changes (helped the MOST) and many different medicines and supplements, some helped, some didn't.

I'm 85-90% better now. Stress still makes me feel worse. Pushing my limits can also make things worse. Yesterday I sat on a hard metal bleacher bench for over three hours for a graduation ceremony. I was in so much pain by the end that I wanted to scream. Part of it was my fault, I should've taken a pain pill before hand and I knew it! I also should've brought something soft to sit on and I knew that too. Part of it is the time of year, so many end-of-school-year events so I'm overtired and over-extended. I also know this and I have to plan better so that next year when this time hits I'm better prepared.

So, no I don't see this as progressive. Though someone with fibromyalgia can have another condition that IS progressive. There is a lot you can do to help yourself feel better, just as there is a lot you can do to make yourself feel worse.

Namian, you said it started only in your hands and over 6 months your whole body hurt. That is the definition of progressive. This is what I am trying to say! Besides the arthritis in my neck, all other tests come back normal. I have pain in my collar bone that never goes away, but as far as every other area of my body, it varies from day to day. I think I eat fairly well. I take my meds and vitamins every day. I think I get plenty of exercise. I do know that some days I probably over do it. I have also been through the things that don't work, somewhat work and what works the best. Each time something new rares it's head, l have more tests and with the same normal results. I'm always told the same thing....it's the fibro.I can do the exact same thing for a week (eat, meds exersice) and my pain be different every day!

You are describing typical fibromyalgia patterns. I always have back and shoulder pain but some days my right foot might hurt, or a hip and the next day I can have pain in another area. When we say "progressive" we are talking about getting worse and worse until you can't move. This can happen with some diseases and types of arthritis doesn't seem to happen with fibro.

Sherrine

One thing I think we seldom think about is that each day we are aging. As we get older, we develop aches and pains that may not be a part of fibromyalgia, though we may think it is. I have aged more than ten years since fibromyalgia started. Often when I ache bad, I automatically think it is fibromyalgia, when in fact it could be my arthritis.

I hope that you all feel better soon.

Hugs, Karen...

Fibromyalgia is not a "progressive disease" because it isn't a disease, it's a syndrome, a collection of symptoms. That does not mean those symptoms can't get worse! It just means that it is not like something like cancer, where the normal course of the disease is to continually worsen, causing greater and greater damage to the body and eventually killing you. There isn't a way to measure whether fibro is progressive since we don't even know what causes it or have any lab tests to measure it by. I think people misinterpret the statement that it's "not a progressive disease" to mean fibro "can't get worse". It sure can. MOST people have fibro symptoms come on gradually, worsening over time - it is unusual for someone to go from totally normal to full fibro symptoms very suddenly like Sherrine.

Also it makes no sense to me for people to say it doesn't get worse if only we do enough things to treat it - you could say that about many disorders/diseases, that doesn't make them not "progressive". For one example, take Celiac Disease: it is considered a progressive disease, but if you realize you have it (which can be hard to find out) and drastically change your diet (for some people they have to change more things than just eliminating gluten, so it's not just a simple fix) it will not progress anymore (and many aspects of it may slowly improve). Treatable does not mean something isn't progressive.

Fibro is even more complex than something like Celiac Disease because it can be much harder to figure out all the different factors contributing to our fibro and make changes in our lives. We with fibro have to do WAY WAY more to care for ourselves than an average non-fibro person. It is not fair to blame people for their fibro getting worse by implying that they are just not doing enough to prevent that worsening. It can be incredibly hard to figure out what to do to help yourself let alone actually be able to do it when you have extreme pain and fatigue!

*EDIT: Also, some things that can worsen fibro are pretty much impossible to prevent and very difficult to do much about.

So the fact that some people can keep their fibro symptoms from getting progressively worse by making major changes to their lifestyle, diet, way of thinking, taking meds, supplements, etc, does not mean it's not progressive. It's just "not progressive" IF you use progressive to mean "everyone who has it is guaranteed to continually get worse and worse".

Post Edited (Pelagicdancer) : 6/10/2013 2:39:39 PM (GMT-6)

Jasmine - No you just sounded like you were saying that addressing factors that were contributing to your fibro was helpful for you; I thought your post made a lot of sense. I was responding to things others had said such as:

"I think it can seem that way if the patient doesn't modify life somewhat, or take steps to manage the condition."

"I'd have to say it depends on what else you are dealing with and how you take care of yourself. If a fibromite refuses to move because it hurts and eats junk food all the time because it is easier...then they will probably keep getting worse"

"if you look after yourself, the condition will stay as is, if you keep abusing your body. Then we've got a different story."

Which I thought sounded like blaming people whose fibro gets worse and implying we have total control over it.

^Who are you addressing Angelic_Victory?

Amen, Debbie.

Post what works for you, but leave it there.

Everyone says, "exercise, stretch, follow this diet, follow that diet, take this med, don't take meds"
It's really got me down lately to see so much bickering over things. As we all know fibro is different for everyone except we hurt and don't know the cause or the cure.

Like our bodies, what works for one might not work for others. Don't get grumpy because you disagree over their view or method. Congratulate them for finding a way to ease the unending pain for themselves. Do what Peter and all of the moderators work so hard for here-Support.

Enough said.

Hey AV! Long time, no type. How's the family hanging, babe?

-kisses-

After my diagnosis, I had to make those decisions. I do not do negativity well-"Do this, what you are doing is not good." and "Gee, this sucks, doesn't it?" makes me angry. A good coach is a cheerleader as well as a disciplinarian. You need both, perhaps not equally, but with judicious application.

Hope the pics are great!

I believe fibro is progressive, at least it has been for me. When my fibro started I only had head, neck, and shoulder pains as well as migraines. Then after a couple of years the sleep issues came on. Then months later the pain moved onto my lower body. And then a couple months later my arms began to ache. And now of course I am getting other issues in my feet.

I have recently started the atkins diet. I have been low carbing it for about a month thinking I would start feeling better not eating so much junk, but it really has not helped, though I feel healthier, the pain has not changed one bit.